Twinspiration

He's Home!

2007-01-15T19:05:00.000-08:00

At about 4:45pm this afternoon, we walked through the door to our apartment with our precious little nearly-six-month-old baby boy! We have a feeding pump, apnea monitor, six medications, about a truckload of odd end accessories, orders and scrips for numerous follow-up appointments and labs..... and a chubby little bundle of joy! So far, he seems most impressed with the ceiling fan in our bedroom (where his cradle is set up) and he seems quite confused by everyone being SO tall! He's used to seeing people just a couple of feet above him from the crib but the cradle is low to the ground and we're all giants from that perspective.

I wonder how long it will take for him to realize that this is home. He probably still expects to see his nurses come bedside any time. I've got to admit, it would be nice if a nurse came with all the other equipment but I'm certain I can handle the different aspects of his care just fine. And, of course, I will have his Nana Cain helping me out some mornings and his Daddy helping at night and on weekends.

We're letting Hannah sleep through to the end of her nap before springing her on him. A cranky Hannah is much harder to control than a well-rested Hannah. We're going to have to go over his care carefully with her, making sure that she understands fully that she is not to touch Kyle without supervision and only really gentle touches then, and she is not to touch any of the nifty gadgets that come with him. One demonstration of the loud noise from the apnea monitor should get that idea across to her, though.

Bulletin for all those who would like to visit Kyle....

I am going to be strict about visitors. All visitors MUST wash their hands thoroughly on arrival and after any trips to the bathroom regardless of whether or not they will be actually holding Kyle.

Obviously, we don't want too much excitement for Kyle so I will also have to limit how much he is passed around. Visitors will likely get to hold him but no passing him off every 15 minutes. He's very social and loves people and loves being snuggled but he also has very bad reflux and too much movement will result in clothes drenched in "recycled" formula on both Kyle and whomever is holding him - kind of like a really disgustingly wet and messy game of "hot potato". So be considerate of Kyle's tummy and of any visitor who might end up holding him at the end of the line.

I will also expect that anyone feeling sick will not visit until they are feeling better for at least a full day. Children and adults alike with runny noses, fevers or coughing (even a small amount) will be asked not to visit for at least 24 hours after these symptoms subside. These are pretty much common sense rules but I want to be clear. Please remember that Kyle had a very rocky start and is not completely out of danger.

Also, for those of you who smoke.... As always, I ask that there be no smoking in our home. This is not a change. But I would also ask that any smokers wear a smock of some sort over their clothes (I will find something to serve this purpose) since a large amount of cigarette smoke can be carried in on clothing and since his lungs are especially sensitive.

Keeping us in suspense!

2007-01-11T13:08:00.000-08:00

Well, a lot has happened since my last blog. Monday night I went in to get kind of a "crash course" in G-tube feeding. They showed me how to hook up the feeding tube, put in his medications and clean the G-tube site. The cleaning of the site was definitely the most aggressive part of the whole process and therefore the scariest part but it wasn't too bad and it only needs to be done once a day usually. They went over how to recognize symptoms of a problem with the G-tube (skin warm around the site, excessive redness, strange color leakage, excessive leakage, etc.) It was a lot of information to take in but most of it was pretty much common sense. All the nurses seem to really like Kyle and who wouldn't? He's turned into a pudgy little charmer (I've started calling him "Prince Charming of NICU"). He has dimpled little knees and elbows and smiles at anyone who says hi to him.

Tuesday morning Chris and I went in to All Children's for training on how to use the home monitor and feeding pump equipment for when we go home. The representative from Pediatric Health Choice demonstrated how to set up, use and maintain the home monitor system and the feeding pump. They're both very easy-to-use machines and very user-friendly. Our digital camera is more complex than these machines. After the training, Chris and I got some lunch before getting trained on G-tube care. For me, it was just a refresher from the night before and Chris always retains information well so we were confident after the training that we were ready to do the G-tube care ourselves.

The staff scheduled use of the "Mom's Rooming In Room" for me that night and Chris and I headed home to get things in order before that night. On the way home, we were able to pick up the Kia from my uncle's shop (the timing belt had snapped back on New Year's Eve and my uncle had been repairing it).

Later that night, I went to the NICU quite excited because this was one of the final steps in getting our boy home. They brought his crib into the rooming in room and we started to hook him up to the home monitor. We had some challenges with the home monitor because it apparently wasn't compatible with their remote system but they finally said that it ws loud enough that they could hear it from the other room anyway so it was okay. That's for sure. It's louder than a fire alarm! A little while later, the monitor started going off. The lights said that Kyle had an apneatic episode (breaths slower than 20/minute) but he was breathing fine. It went off several more times and we didn't figure out for quite a while that the leads (the pads that go on his chest) were just too close together.

A little while later, the security guard came to get me because someone had reported that our Kia had the door wide open. I panicked a little because I had left the laptop in the back and I felt certain that I had locked the door. When I got to the car, it was fine and the laptop was still in there so I guess the car door must have popped back open after I walked away. I haven't quite gotten the hang of the locks on this car. It's got one of those locks where you have to lift the handle while you close the door, or it comes unlocked. I like my Civics locks because you have to lock them with the key from the outside or it won't lock. It's a great safeguard against locking your keys in the car!

Anyway, the night with Kyle went great. He slept most of the night. I didn't get as much sleep as he did because I was so excited.

Unfortunately, the next morning the nurse practitioner brought bad news. Just when we were about to get the go-ahead to take Kyle home, they found out that he was scheduled for surgery to repair his hernia for January 17th! The nurse practitioner said that she would try to work something else out so we wouldn't have to bring him back for surgery just a week after discharge. Well, she worked it out so that his surgery was today instead. In some ways, that's good because they prefer to do the procedure before discharge and they were able to do his circumsician at the same time. But it means that the expected discharge date has been pushed back to Monday. Even then, it's not a definite. It all depends on how well he recovers from this surgery and gets back on feedings. We'll just take what we can get.

At least the apartment's ready for him to come home. This morning before I headed out for the hospital, Hannah was rocking the cradle and saying "I'm rocking my baby brother" and "Kyle coming home?". She is so excited that he'll be coming home. I wonder if she'll still like the idea after he comes home.

I'll post new pictures as soon as I get a chance... for now, I'm using the All Children's Family Waiting Room computer while I wait for Kyle to come out of recovery.

A Good Cry

2007-01-04T12:16:00.000-08:00

In case this website isn't enough of a tear-jerker....

A couple of days ago, I was scanning through MySpace music sites looking up songs of artists I knew. I ran across Mark Schultz, a Christian music artist I hadn't heard for quite a few years. So long, in fact, that I had forgotten one of the songs he was most popular for... "He's My Son". For a good cry, "view my complete profile" and listen to the audio clip.

Then, yesterday, while Kyle was in surgery for the g tube, I went by the chaplain's office at the hospital to make sure he had gotten the bell ornament I had left for him. Another chaplain was there and we talked for a little bit about Kyle's progress but a little way into the conversation, it hit me like a wave... I was in the chaplain's office for the first time since saying goodbye to Eric. As I looked around, I broke into tears so suddenly that it surprised me almost as much as it did the chaplain.

Lately, I've had times when I feel like I'm supposed to be more of a wreck than I am. I know that it's a good thing that I've been able to keep it together and focus on Kyle and Hannah and life. There was a part of me that wanted me to just curl up and stop existing after we lost Eric. Sometimes I feel like I've adjusted too well to the loss - like I should be more broken than I am - like I couldn't have cared that much if I can just go on with life without crying every day. But the last couple of days have made me realize how much I do care and how much I do feel the loss. I just have to live around those moments that hit me like a brick. I have to be able to make it through a day without breaking down. Too many people need me to be strong and so I am strong for them and by being strong for them, I'm strong for Eric.

It really helps that I've had friends and family who've been so supportive during all that we've been through and I've been able to talk about things and not let Eric just be forgotten. Thank you all.

G-Tube

2007-01-04T11:26:00.001-08:00

Yesterday morning, Kyle had surgery to put in a "G tube", a kind of feeding tube that goes into the abdomen instead of the nose. They brought him to the downstairs NICU and did the procedure bedside. He did very well and is now back to NICU3 until discharge. The nurse practitioner, Stephanie, says that we'll see how he does over the weekend and if all goes well, Kyle will come home early next week.

Here's a video of Kyle shortly before his surgery yesterday...

Baby Boy

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and here's a picture of the g tube just after it was put in...

Blessings

2006-12-28T22:42:00.000-08:00

Thanks to a VERY generous gift we received annonymously last week from someone in our church, Chris and I were able to purchase a larger vehicle yesterday. It's a secondhand (or maybe fifthhand) 1997 Kia Sportage but it runs great and can definitely fit both carseats.

We were also able to get our own digital camera so we can stop monopolizing my dad's camera for pictures of Kyle and we found a really good deal on a laptop for me to use updating this blog and later on in school. Thanks to our "Christmas Angel", we still have enough to pay off some debts that were too much for us before. If our "Christmas Angel" is reading this, thank you so very much!

Baby's First Christmas

2006-12-28T22:19:00.000-08:00

The swallow test showed that Kyle was not aspirating (which is good). The doctors say that they are probably going to put in the other kind of feeding tube next week some time.

In the meantime, Kyle is making lots of friends in NICU3. Whenever I visit him, staff and other parents always say how he's always smiling and so friendly. On Christmas day I actually was able to get pictures of his elusive smile. Previously, he would smile lots - until I pulled out the camera. Then his face would go all serious. But he flashed me his smile a couple of times Christmas day!

Here it is...

Christmas Party

2006-12-28T21:00:00.000-08:00

Thank you to all those who came out for our Christmas party last Saturday. It wasn't feeling like Christmas until the party. Here's some highlights...

Family Pics

2006-12-17T21:15:00.000-08:00

This morning, the All Children's staff worked with us so we could get family pics together. Hannah was thrilled to see her baby brother and Kyle was fascinated by his big sister. Here are the results...

Home for New Year's?

2006-12-17T21:00:00.000-08:00

I spoke to Dr. Wadhawan this past week about Kyle's condition. They are going to do a "swallow test" (probably tomorrow) where they essentially do an x-ray while he feeds from a bottle to see what's going on with the feedings and why his respiratory rate goes up when feeding.

Dr. Wadhawan says that depending on the results from the "swallow test", they will start discussing the possibility of a feeding tube being put directly in Kyle's stomach (by surgery). This doesn't sound very pleasant but the doctor says that Kyle would be able to go home with this kind of feeding tube.

I asked the doctor if there was any chance of Kyle being home by Christmas. He said not really but possibly by New Year's! I don't want to get my hopes up too much but fingers and toes are crossed!

The doctor also helped me arrange for us to be able to bring Hannah in long enough for a family picture despite the rule against sibling visitation.

My First Christmas In Heaven

2006-12-17T16:15:00.000-08:00

(this is a poem I got from the funeral home)

My First Christmas In Heaven

I see the countless Christmas trees around the world below
With tiny lights, like Heaven's stars reflecting on the snow.

The sight is so spectacular, please wipe away the tear
For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear
But the sounds of music can't compare with the Christmas choir up here.

I have no words to tell you, the joy their voices bring
For it is beyond description to hear the angels sing.

I know how much you miss me, I see the pain inside your heart.
But I am not so far away, we really aren't apart.

So be happy for me, dear ones, you know I hold you dear.
And be glad I'm spending Christmas with Jesus Christ this year.

I sent you each a special gift from my heavenly home above.
I sent you each a memory of my undying love.

After all, love is a gift more precious than pure gold.
It was always most important in the stories Jesus told.

Please love and keep each other as my Father said to do.
For I can't count the blessing or love he has for each of you.

So have a Merry Christmas and wipe away that tear.
Remember, I am spending Christmas with Jesus Christ this year.

In loving memory of Eric

Christmas Party After All

2006-12-12T07:02:00.000-08:00

I know that I must be insane, but I'm having the Christmas party after all. It just doesn't feel like Christmas without it, so...

Christopher and Corinne Foreman
cordially invite you to our 5th annual
Christmas Jump Start Party!
December 23rd, 2006
4:00pm-10:00pm

For more information (like location), please e-mail me at: coriander_smiyles@yahoo.com

Our usual party rules apply:

Come at whatever time you want between 4:00-10:00pm
Stay for however long you want
Bring a happy heart and some Christmas spirit
Invitation is open to all
Feel free to bring any of your friends and family
Dress however you are comfortable
Come hungry - We will have food
No need to RSVP

Roller Coaster Year in Rhyme

2006-12-12T07:00:00.000-08:00

At the start of the year,

A new job – a fresh start.

A month later, Surprise!

In the womb, a small heart.

Spring rolls on in

And Hannah’s no longer 1.

An ultrasound shows

We’ll have double the fun.

As summer moves in,

The belly gets round.

Then our car gets stolen,

But, don’t fret. It was found.

June and July, spent mostly

In hospital beds

Or at home on bed rest

(At times, loopy on meds).

Joy came in July

On the 19th (Wednesday).

First Eric and then Kyle

Came out early to play.

But on Saturday night,

After only three days,

Eric left us for Heaven

With a smile on his face.

Now he watches from Heaven,

No longer in danger,

Held by the Son

Who was born in a manger.

And Kyle lives on,

Though still fragile and small

But a champion fighter,

Surviving it all.

Impending Discharge?

2006-12-12T06:49:00.000-08:00

The cardiology department is not going to do surgery at this time on Kyle. They say that they prefer to wait until the baby is larger and older to do such an invasive procedure so after he's discharged from the hospital, we will need to follow-up with the cardiology department. So now we're back to waiting for Kyle to get on regular bottle/breast feeding. He's back in NICU3 on the third floor of the hospital. They make it sound like we might actually get to take him home soon but I don't want to get my hopes up since I've thought a few times that we'd be taking him home and it fell through for some reason or another.

I've learned to accept that Kyle may or may not be home before Christmas.

Out of surgery

2006-12-01T23:32:00.000-08:00

Kyle had no complications with surgery. Unfortunately, it didn't solve the problem, though. They found through the procedure that Kyle's artery valve is open but it is too narrow to do it's job. This means that next week the cardiology department will review the information and decide when to schedule open heart surgery for Kyle. Looks like Kyle will not be home in time for Christmas after all. On the up side, he came off anesthesia like a champ.

Heart Surgery for Kyle

2006-12-01T11:27:00.000-08:00

Yet again, I'm writing from the All Children's Hospital family waiting room while Kyle is in an operating room. The cardiologist has decided to do the cardio catheterization with ballooning after all. The cardiologist did inform us that, although this is a pretty standard procedure, it is complicated by the artery calcification because it makes the arteries more rigid and brittle. First, they are testing the pressures and taking pictures of the heart before doing the actual procedure. They are being as cautious as possible but there is still high risk in this procedure. On the positive side, we got to hold him and take pictures of him without even the feeding tube on his face since they had to stop feedings last night to prepare for the procedure today.

I will try to write more later to update you all on how the procedure goes.

Christmas Party Postponed?

2006-11-17T10:50:00.000-08:00

It looks like I won't be able to do my usual "Anti-Holiday-Stress""Christmas Spirit Jump-Start" Christmas Party this year. I'm still trying to think up some way to come through and have it after all but I don't want to do it at all unless I can do it full justice. I might have to wait and do a "Christmas in Spring" party. I don't know. I'll keep you all posted, though.

Look, Ma! No cannula!

2006-11-17T10:45:00.000-08:00

Wednesday the nurses removed the nasal cannula and Kyle is doing quite well off of it. He's also up to 7 pounds! The nurse suggested that we go ahead and take the Infant CPR class at the hospital soon since one of the requirements for discharge is that all caregivers attend the class. It's good to hear all the staff keep talking about discharge but I wish that they could tell me with more certainty how much longer it will be.

A Wedding!

2006-11-17T07:43:00.000-08:00

Stephen Croft, who was the Best Man at Chris and my own wedding, got married last Sunday, November 12th. Chris was Best Man. Chris and Steve have been friends since they were kids and we're both so glad to see him married off.

Hannah is a really big fan of both Steve and the bride and had a blast at the wedding. Although she was hard to keep still during the ceremony since she saw her daddy and her buddies all standing up front, she was amusing during the reception. She blew bubbles, rang the tiny bells and ran around with the other small children.

Update

2006-11-11T12:09:00.000-08:00

Monday (11/6), I went to see Kyle. He is still in the downstairs NICU where they had put him to recover from anesthesia. He is in Pod #4. They said that the cardiology department had gotten the results but had not made a decision on what to do yet. The artery calcification (which the nurse refers to as stenosis) is on the outer branches of the arteries - not near the main valve - so the cardiologists are not sure if heart catheterization using ballooning would be effective or even needed.

Yesterday (11/10), I went to see Kyle again and the nurse practitioner said that it seems the cardiology department has decided to just keep an eye on Kyle but not to do any procedures at this time. They have been doing the occasional bottle feed for him but they said that when they took him off the diuretics, his respiratory rate went up again so they had to take him off bottle feeds temporarily and they started him back on the diuretics. They are going to try to wean him off the diuretics more slowly this time to see if all goes well. While I was there visiting, they said his respiratory rate was okay to try a bottle feed so I asked if I could try breastfeeding him. They said it was okay! He latched on like he had been doing it since day one! It was a truly special moment.

The nurse practitioner says that their main goal now is to get Kyle on regular feeds. If they can get him on regular feeds, she says we will be able to take him home shortly afterward. Of course, there's the possibility that he might need oxygen when we bring him home and we'll be having to bring him to All Children's for plenty of follow-up care appointments (eyes, heart, lungs, development, etc.) but we would be taking him home!

In other news, the timing couldn't be better for Kyle coming home since my first cycle with Nielsen just ended. From now until December 28th (when the next cycle starts up), the only hours I'll have to work are the occasional training classes so I can be home more with Kyle his first weeks back.

My mom and I also worked the election this past Tuesday, which fills in some gaps financially between cycles at Nielsen. Mom and I got about 20 hours of training pay for the elections and then 15 more hours for the call center the day of the elections. Not only that, but as I left the last training class before election day, the training supervisors asked if I'd like to work in a supervisory position for the day of the election instead of taking calls. I agreed and they paid me a little extra for the day of the election. It was fun although my feet were killing me for a couple of days after. They even said that if I work with the call center for any future elections, they would like me to be a supervisor again!

Trick-or-Treat

2006-11-01T07:31:00.000-08:00

Saturday night, I took Hannah to the Safety Harbor "Harborween" at the city park. Hannah got to jump in an inflatable castle, pet animals in the "petting zoo" and "trick-or-treat". She still doesn't quite get the concept of waiting in line so the long lines waiting for each activity were frustrating for her but she had fun.

Last night, Chris and I took Hannah trick-or-treating in our neighborhood. She loved it! She walked up to the doors and said "Trwuck or Teet!" (Trick or Treat) or if they had dogs she would say "DOGGIES! Hi, doggy". Then after they gave her a couple of pieces of candy, she would say "Dankoo" (Thank You)- or stare at them confused if they only gave her one piece. Sometimes, she even said "Hay Hoween" (Happy Halloween) as she walked away, already reaching in the bag to see if she liked what they had given her.

She seemed the most impressed at the end of the night when she discovered (with a little counting help from Mommy) that she had thirteen lollipops. She wasn't as impressed with the chocolate but I'm sure that Chris and I will find some way of using it all up.

Kyle News

2006-11-01T06:45:00.000-08:00

Kyle recovered wonderfully from the eye surgery last Tuesday. He did not need to stay intubated or in an incubator. In fact, the doctor said that the procedure took about half the time it generally takes because it went so smoothly. Dr. Mendelblatt did say that Kyle will need regular eye exams for the rest of his life - lots of them during the first few years of his life. We will need to watch him closely for crossed eyes and other abnormal eye movement. The doctor said he would do a follow-up eye exam on Kyle the following Monday to make sure that the surgery was successful.

A couple of days after the surgery, I went to visit Kyle and found that they had moved him upstairs to NICU3 which they say means he's one step closer to discharge. He now has a crib right by a window and has a TV nearby. He'll be a couch potato (couch "tater tot") before he even comes home. He looked happy with the new location.

Monday night, the nurse had removed the nasal cannula just before I arrived to visit. Kyle was a happy camper without the cannula up his nose but his respiratory rate was pretty high so after I left, they put the cannula back. But at least I got to hold him without it for a little while. His high respiratory rate is also why I haven't gotten to breastfeed him yet. Monday was a pretty busy day for Kyle. Earlier in the day, he had gotten his follow-up eye exam and an X-ray of the lungs. Then, while I was still there visiting him, his Grandma Foreman (Chris' mom) came to visit and got to hold Kyle for the first time.

Yesterday afternoon, my mom and I went to a training class for the upcoming election's call center and just when we were leaving for home, I got a call from Kyle's nurse. She said that the doctor was concerned about Kyle's high respiratory rate and wants to do an MRI and MRA to see what's going on with his heart and lungs. Since MRI/MRA requires the patient to be still, and you can't just tell an infant to hold still, they need to put him under anesthesia again. The MRI/MRA is tomorrow morning (Thursday) around 8:00am and the doctor plans on doing an Echo while Kyle is still under anesthesia.

Little Eyes

2006-10-24T17:33:00.000-07:00

I'm actually writing this post in the All Children's Family Waiting Room. Kyle is undergoing laser eye surgery right now for Retinopathy of Prematurity.

While I visited Kyle yesterday, they were prepping him for his eye exam with eye drops. After I left, Dr. Mendelblatt (the opthamologist) checked his eyes and called me immediately to say that Kyle's eyes had gotten progressively worse since the eye exam a week before and he would need laser eye surgery. Without the surgery, Kyle could completely lose vision in both eyes due to retina detatchment so Chris and I decided to approve the surgery. Once they finish this surgery, Kyle will be back in the incubator with a breathing tube temporarily - just to help his recovery.

On a happier note, Kyle was moved over the weekend from "Pod #1" of the NICU (which is where they put the more critical patients) to "Pod #4" (where they put patients who are almost ready for discharge!).

Before the eye exam yesterday, I was holding Kyle and he was showing me his wide range of emotional facial expressions. He would show me his most heart-breaking frown and then transition straight into a huge grin. He even laughed and gave a tiny little cry while I was there. The nurse had also told me that if his repiratory rates had been a little lower, they would have tried him on breastfeeding.

Smile

2006-10-20T05:43:00.000-07:00

Kyle was so happy that Daddy was holding him...

3 Months Old

2006-10-19T11:26:00.000-07:00

Kyle's been doing great! They've taken his nasal cannula (that's the little tube that sticks up his nose) settings down to the minimum. This week, they're weaning him off the three breathing treatments that he's been on and they'll start him on bottle/breast feeding in a couple days! He's up to 5lbs, 4oz in weight. We still don't know how much longer it will be before we can bring him home but at least it's looking more like sooner than later. Now we just need to work on getting the apartment ready for bringing him home. We still only live in a two-bedroom but we seem to have enough furniture for at least three.

In other news, I have decided to pursue a career in Non-Invasive Cardiovascular Technology (EKGs, Echo Cardiographs, etc.) at Sanford-Brown Institute in Tampa. All that has happened with Kyle & Eric has seemed to be pushing me into the medical field and this is a way I can get into the medical field without having to stick needles into anyone. Plus, living in Florida, cardiovascular technicians make pretty good money because of the large elderly population in need of EKGs on a regular basis. The program will only take a year and four months to complete and they said that they let students bring in family members to practice on. So I could bring Kyle in and see for myself what Pulmonary Artery Calcification looks like and learn more about it. While I'm in school for this, it's going to take a lot of sacrifice of time and money but once I'm done I'll have a career that can make things a lot easier in the future.

Meanwhile, everything's been going well for me at Nielsen and now that my mom's working there, she and I are able to spend time together on our breaks.

Sunday Swing

2006-10-07T07:33:00.000-07:00

Last Sunday night (10/1), Raneasha and I went swing dancing again - this time at Zendah Grotto Swing Sunday in Tampa. It turned out that there were a couple of special guests that night. One was Norma Miller, a pioneer in the Lindy Hop style of dance from back in the days of Swingin' at the Savoy. The other was Bill Cobbs, movie star! Norma Miller was actually in town working on a documentary of her life.

Lots of News!

2006-09-30T17:30:00.000-07:00

It's been a while since the last update. Between keeping house, watching Hannah, visiting Kyle and working nights, I've been very busy.

Thursday (9/21), my mom watched Hannah so I could see Kyle again. I wasn't able to hold him again because I ran out of time but I was thrilled to see that for the first time ever, Kyle was wearing clothes!!! The little preemie size onesie is still a little large for him but he looked adorable in it.

Friday (9/22), they began the second course of steroids for Kyle. I didn't visit him that day because I took Hannah to Chuck-E-Cheese with the mom group from church.

Sunday (9/24) afternoon , Chris and I went to All Children's to visit Kyle and we both got a chance to hold him! The nurses gave us the good news that, since Kyle was doing so well, they would be extubating him (taking the ventilator tube out) soon.

Monday (9/25), I met with a couple of other stay at home moms at the Sprayground. As with Friday, it was nice to talk to other mothers and let Hannah play with other children. That night, I had an additional training class at work. One of my fellow trainees, Raneasha, commented that we wouldn't be working the same shift after that day so we decided to go out. We ended up going to Bricktown54, a dance club on McMullen-Booth Rd that I've been wanting to go to since I first heard about it! We had a blast!

Tuesday (9/26), my mom watched Hannah so I could go see Kyle and get to hold him while I was there. Just when I was about to leave my mom's house, I got a call from All Children's Hospital that they had just extubated him that morning! The nurse practitioner said that I might not be able to hold him since he was just taken off the ventilator but that I could at least help with the hands-on like changing his diaper. When I got to the hospital, though, the nurse said that he had been doing so well off the ventilator that I could hold him after all! He now only had the tiny tube for feeding in his mouth and a CPAP (Continuous Positive Airway Pressure) on his nose. The CPAP looks like a little plastic elephant trunk.

Wednesday (9/27), I decided to take Hannah to the beach. She had a blast playing in the sand and waves and just when I was packing up our stuff to leave, Reginald Roundtree and the Channel 10 News crew were walking along the shore, filming!

That night I didn't have to work since they had my schedule wrong so I called up Raneasha to see if she wanted to go to Gulfport Casino's Wednesday Swing Night. We stayed until they kicked us out learning better swing dancing and a little lindy hop from a veteran swing dancer there. Heading back to the car, we heard calypso music and followed it to a tiny bar around the corner where they were doing limbo and karaoke! No, I did not sing karaoke.

Thursday (9/28), I went to see and hold Kyle again while my mom watched Hannah again. Kyle was still doing very well off the ventilator with the CPAP and when he cries, you can hear a little bit of a noise, though still barely audible.

Yesterday (9/29), I was a little lazy and just hung around the house with Hannah. My mom got a call from Nielsen saying that she was hired and would start training October 9th.

Earlier today, I went to see Kyle again and he's now getting clean air using the normal tubes that stick up the nose. He's not too fond of it - he keeps pulling it out of his nose but he's doing well on it. He was wide-eyed the whole time I held him, staring at me in awe. It was wonderful! The nurses say that now he likes being held and responds well to it so he should be held as often as possible!

More Visiting With Kyle

2006-09-21T09:00:00.000-07:00

Yesterday (9/20), I went again to visit Kyle. Chris was home with an upset stomach so he watched Hannah while I was gone.

The nurse told me that I wouldn't be able to hold Kyle that day because he had just gotten his vaccinations earlier that morning and was not too happy about them. They had also given him Tylenol for the pain which gave him a nice little smile most of the time but any time he tried kicking his feet, his expression would quickly change since the shots had been done in his feet.

The nurse also told me that Kyle's ventillator settings were up again because Tuesday night he had decided to yank his ventillator tube out, himself. He decided after the tube was out that he didn't like it out. They had re-intubated him and he was back down to 39% by the time I showed up around Noon.

Dr. Wadhawan came over to talk to me while I was there and said that if they do the course of steroid treatments again, it would most likely start Friday and may continue for longer than the previous treatment course. He also said that he had reviewed the literature I had found and thought it likely that Kyle had the Pulmonary Artery Calcification linked to Twin-to-Twin Transfusion Syndrome. It was so nice to hear that from a professional. I had been pretty sure, myself, but I'm not a doctor.

Rock-A-Bye Baby

2006-09-21T08:45:00.000-07:00

Monday afternoon, I went to All Children's while my mom watched Hannah for me. Kyle was having a good day and the nurse said that I could finally hold him!!! I had the nurse take pictures of me holding him for the first time (I will post the pictures to this post as soon as I can get the digital camera to give them up).

While I held him, his saturation levels stayed at a good level the whole time. Kyle gave me rewarding little smiles and a couple of times opened his eyes just long enough to peek at his new surroundings. I asked the nurse if he could get a little bit of breast milk on his tongue so he could actually taste it. He usually doesn't get to actually taste the milk since it's given to him through his feeding tube. He gave a sweet little smile after tasting his first bit of breast milk.

The nurse practitioner said that they might not need to do the steroid treatment after all since Kyle had gone down on his ventilator settings over the weekend and had gotten down to 22% oxygen.

Before leaving, I signed the authorizations for Kyle's vaccines. The nurse practitioner said that they try to do vaccines at two months old - even for preemies - unless there is neurological damage.

New Doctor

2006-09-21T08:30:00.000-07:00

Last Friday evening (9/15), while I was at work, my parents watched Hannah so that Chris could go to All Children's and meet with the new neonatologist, Dr. Wadhawan. Dr. Wadhawan is the same doctor who began the administration of Kyle's steroid treatment back in August (see post: Long Night). He explained that he was not convinced that what Kyle had was the Infantile Arterial Calcification (IAC) and did not feel that there was much point to doing the genetic testing. Chris gave the doctor a print out of the literature I had found online about Pulmonary Artery Calcification (PAC) and its link to Twin-to-Twin Transfusion Syndrome(TTTS) and the doctor said he would look into more information about those cases.

Dr. Wadhawan is more concerned about Kyle's lungs. Kyle has shown great improvement since August but not as much as hoped. He has some scarring on his lungs which may have adverse effects for the rest of his life and as long as he is on the ventilator, he's at risk for even more scarring. Dr. Wadhawan has asked us to consider another course of steroid treatments with Dexamethasone to treat the lung disease.

I feel that this doctor's concerns are more aligned with my own concerns.

Heigh ho, heigh ho...

2006-09-12T11:50:00.001-07:00

I started training for my new job at Neilsen Media Research last night. This week and next I'll be working Mon-Fri 6:15p-10:45p for training and after that, I'll be working Wed-Sat 6:00p-Midnight.

I'm so used to being the baby of the group but not in this group. In my training group, I'm one of the older women. We have several in our group who are still in high school or else just out of high school, and my trainer is only about 21 years old. Most of the other trainees have worked in a call center before. I, on the other hand, have only worked in one other call center and that was for this month's primary election! I'm certain that I can do this, though.

Growing Boy

2006-09-12T11:40:00.000-07:00

Friday afternoon my parents watched Hannah so that I could go visit Kyle at All Children's. I got to the NICU just as the nurse, Stephanie, was starting "hands-on" with him. She let me massage his back with a tiny little vibrator to loosen up the fluids in his lungs for suctioning and a little while later, she let me change his little diaper. It was wonderful to have this little bit of participation in his care.

Kyle is up to 3 pounds, 4 ounces. He's getting 7ml of breastmilk every hour! He's started smiling (so far, only when I put the camera away) and he was able to move his head a tiny bit on his own. His oxygen is still pretty high but he's growing and getting a little more cooperative.

Infantile Arterial Calcification?

2006-09-12T11:30:00.000-07:00

Last Thursday afternoon, I got a call from Dr. Figeroa about Kyle's heart condition. He said that he believes Kyle may have Infantile Arterial Calcification (IAC) - a genetic disorder rarely found. He told me of a test case in Australia where they tried an experimental treatment and had success recently (see link above). However, in order to confirm whether that is what Kyle has, we would have to send samples of Chris', Kyle's and my own blood to a Dr. Frank Rutsch in Germany for testing. The testing is so specialized and experimental that we would have to pay a very large fee for the testing and we would not get the results back for 10-12 months. If the tests came back positive for IAC, there is a medication that has been used ONCE in the treatment of IAC that Dr. Figeroa would want us to consider even though it would mean jumping through hoops since it's so experimental and has never been used on an infant so premature. They don't even know if the medication would prove helpful since it has only been used once before.

Chris and I have decided against testing for this disorder. We love Kyle very much and would find a way to pay the cost if we felt that some good would come of it. However, for one thing, literature I've found on this disorder says those who have it almost never live past 6 months (which means that we wouldn't even have the tests back by the time he died). Also, considering there have been no known cases of this GENETIC disorder anywhere else in either of our families and the references mainly to CORONARY arteries rather than pulmonary arteries in the literature I've found, we do not believe there is enough evidence that Kyle might have this condition. Plus, the information I've found regarding Pulmonary Artery Calcification, linking it to recipient twins in Twin-to-Twin Transfusion Syndrome, seems to sound more likely in Kyle's case.

2006-09-06T17:00:00.000-07:00

Heart News

2006-08-31T13:00:00.000-07:00

Yesterday I went to All Children's to see Kyle and I met his new doctor, Dr. Figueroa. Kyle's Echo-Cardiograph the day before had shown that Kyle had calcification on his pulmonary arteries. Pulmonary Artery Calcification is so rare that they have to send Kyle's enzymes overseas to Europe for testing! As soon as I got home, I looked up his condition on Google and the few references that had to do with children, rather than adult dialysis patients, also referenced Twin-to-Twin Transfusion Syndrome (TTTS). The information I found says that the "receipient twin" in TTTS (which was Kyle) may develop this condition because of the overload on their heart in utero. One of the references to this condition mentioned a surgery that was done on one child at 4 months of age that was successful in treating the Pulmonary Artery Calcification so I guess there's at least there's treatment options. The doctor did say that this is a very serious condition, though, especially combined with his lung problems.

On the happier side, while I was there, Kyle was asleep but he lifted his hand with the IV in it up to his mouth and started licking his IV... It was so funny to watch! The nurse tried giving him a pacifier (the smallest pacifier you'll ever see) but he didn't want it. As soon as she took the pacifier away again, Kyle lifted his hand and started licking the IV again!

Water Play

2006-08-29T15:15:00.000-07:00

Earlier today, Hannah and I went to the Oldsmar "Sprayground", a children's water park especially built for younger children. They have water spraying from everywhere. There were over a dozen other children there, all within a couple years of Hannah's age.

Now that I'm going to be working nights and staying home days with Hannah, I feel like I can be a real "stay-at-home mom" and do the "stay-at-home mom" thing. I watched Hannah have a blast playing with other children and getting soaking wet and talking with other moms.

I think Hannah and I will probably visit the "Sprayground" many more times. The best part was, it was free! So we can go as many times as the weather allows.

Back to Work

2006-08-28T12:50:00.000-07:00

Last week I got a call from Barbara at Nielsen Media Research. She scheduled me for an assessment to see if I could do the job and explained that their hours fluctuate based on the TV sweeps schedule but they have nights and weekends available so I wouldn't have to put Hannah (or Kyle, later on) in daycare.

Saturday I went to the assessment. The office I would be working at is in Dunedin near Main Street so I expected that it would take 20 minutes or so to get there. It didn't even take 10 minutes! The assessment included a basic listening/typing assessment, a recorded speaking assessment and a personality inventory. It took about an hour and then they said the recruiter would call me with the results.

Sure enough, I just got a call again from Barbara and she said that I'm hired! I start training September 11th at 5:45 PM. After training, I will be working Wednesday - Saturday, 6 PM - Midnight. I'm sure that the schedule will take some getting used to but I'm sure that I'll do okay.

Better and Better

2006-08-23T08:45:00.000-07:00

Kyle's improving every day. The nurse practitioner said that he was doing quite well without the Vecuronium now and his oxygen has been staying down at around 36-38% and his gas levels and saturation levels have been staying good. Kyle's lung X-rays have also been looking better.

I met with Social Security Administration and applied for SSI Child Disability for Kyle. They said he's a definite approval because his birth weight was below 1199 grams (2 lbs, 10 oz). Under SSI, he can get SSI Medicaid and as long as he's still in the hospital, he qualifies regardless of mine and Chris' income. This is really good news since I had been worried that if I got a job we wouldn't qualify for Medicaid anymore and wouldn't be able to afford Kyle's care in the NICU. This way, I can get a job and still have Kyle's medical bills covered. I'm hoping I can find a weekend or night job so that I don't have to put Hannah back in daycare - especially since daycare is going to be a challenge once Kyle's discharged. Daycare's hard to find for average newborns, let alone preemie newborns.

My mom and I went to a job fair Monday and I applied for a nights/weekend position for Nielsen Media Research and gave my resume to a couple of other companies that had nights/weekend positions available. I also put in my name with Randstad Staffing again and my mom and I are signed up for a temp job with them to work in the primaries election call center September 5th.

Looking Good at a Month Old

2006-08-20T12:46:00.000-07:00

Chris and I went to see Kyle last night (8/19) and he was looking good. They had weaned him off the Vecuronium to see how he'd do without it and so he was moving around and opening his eyes. His oxygen was down to 38% and his saturation levels were staying up around the 80%'s and 90%'s. The Vecuronium has caused him to swell up a little but he looked less swollen when we went last night and he's starting to look more like a little baby and less like a little old man.

Hannah went with us and as soon as we got to the parking lot at All Children's, she started saying "Baby Kyle". She knew where we were going.

Chris' birthday is today (8/20). He had some guys over Friday night to play video games and we all had fun.

Minor Improvement

2006-08-13T09:15:00.000-07:00

The only update I have is that Kyle is slightly improved. He still needs quite a bit of help from the ventilator but he's making progress in the right direction at least.

Long Night

2006-08-11T23:50:00.000-07:00

Last night (Thursday) we got a call from Kyle's nurse practitioner around 6:00pm saying that Kyle had a rough night but was doing much better and his little black toes were looking much improved.

Around 7:30, my parents called and said that they were just leaving All Children's and the nurse had seemed concerned about Kyle's weight or something but they couldn't give them any information.

Around 8:30, one of the night doctors called and said that Kyle had taken a turn for the worse and if Chris and I could come down to the hospital, it might be a good idea. They had put him on the high frequency ventillator again and were having to keep it at 100% and Kyle's gas levels were of concern. I called my parents and asked them to come watch Hannah so that we could head down to All Children's.

As soon as I hung up from talking to my parents, I got another call from the night doctor and she said they were going to administer Hydrocortisone and would most likely put Kyle back on the Vecuronium to paralyze him again.

Chris and I rushed down to the hospital and were confused when we came into the NICU. Kyle's incubator was not in it's place. In fact, there was no incubator in that spot. They had moved Kyle across the room to make more room around another incubator where another family was having a worse night than us. I recognized all the signs. They had set up curtains around the incubator for privacy for the family, sent in the chaplain, the couple were emotional and clearly heartbroken and the IV pole had numerous syringes of medicines like Dopamine and other medications I recognized from Eric's last days.

Dr. Wadhawan, the neonatologist on staff, came to speak with us and made it clear that Kyle was very sick and his lungs were not doing well. He mentioned the possibility of using the Dexamethasone (a corticosteroid) and asked if Dr. Brooks had discussed with us the potential risks of using this kind of steroid. We let him know that we were willing to take the risk if it may improve Kyle's lungs and keep him with us so they administered the Dexamethasone in place of the Hydrocortisone. They had stopped the Vecuronium for a while so Kyle wasn't moving much but his eyes were wide open when we got there. He was looking around with his big, bright eyes trying to see everything that was happening.

Dr. Wadhawan let us know that the steroids would take anywhere from 24-48 hours to show any change so we were basically just waiting it out. Chris had to leave around 11:00pm to go home so that he could work this morning so his mom gave him a ride home so that I could stay with Kyle.

Once Chris got home, my parents came down to the hospital and my dad left my mom with me for support and let me know that he would arrange for Caleb to watch Hannah in the morning when Chris left for work so there wouldn't be a rush on me heading home in the morning.

It was a long night of watching and waiting. Seeing as Kyle was on the Vecuronium again, there wasn't a lot to watch except numbers. The nurse said that we wanted the ventillator % to go down and the saturation % to stay up.

Mom and I took several breaks in the cafeteria and family waiting room and each time we returned Kyle was doing a little better and the family across from us was doing worse. I felt a wave of sympathy when I saw them tearfully carry their small baby out of the NICU with their minister beside them and I nearly cried when I saw the staff clearing the space where the incubator had been. I knew what they were going through and I felt a selfish joy that we were not in the same situation. Though things were touch and go with Kyle, he was stable and slowly improving.

Around 4:00am, Kyle's ventillator was down to 68% and his saturation was up to 94% and the nurse said his gas levels were good so Mom and I went to the family waiting room with a couple of pillows and blankets and got a couple of hours of uncomfortable napping in. We got up at 6:00am to check on Kyle but I had forgotten that the NICU doesn't allow visitors during their shift changes from 6-7:00 so we had to wait another hour.

While we waited, we talked to a woman in the family waiting room who had a 2 1/2 year old granddaughter (Vanya) in the hospital for chronic heart problems. I was thankful that my own 2 1/2 year old did not have any severe health problems and never had.

After 7:00, we returned to the NICU. Kyle was back up to 94% on the ventillator and down to 84% on saturation. The nurse said that it was mostly due to the hands-on she had just done with him. We got to talk to Dr. Wadhawan again and he said that, though Kyle was still sick and not out of the woods yet, he was doing better than the night before and only time would tell if the steroids would help improve his condition.

That was enough to let me leave for home without too much guilt or worry. I was still concerned about Kyle's condition but exhaustion and back ache were calling me back home to bed. There was nothing I could do at the hospital anyway. I told the nurses to call me with any changes and headed home.

Unfortunately, we still don't have any good news to report yet but we don't have any bad news either. We're just waiting. Please continue to keep us in prayer and I will update as soon as we know more.

Murphy's Law

2006-08-11T22:50:00.000-07:00

Wednesday afternoon (8/9), I was headed to All Children's with Hannah in the car with me. Just as I was coming to where I-275 branches off to I-175, I heard a noise and realized that our driver's side front tire had gone flat. I pulled over and felt helpless. I know how to change a tire but I knew that we didn't have a spare because our spare had been stolen with the other wheels back on June 4th and I also wasn't supposed to lift that much weight yet. It was only 3:00 in the afternoon so I knew that almost everyone I knew was at work for another two hours.

Luckily, Steve Croft and his lovely fiance, Leilei, were out and about and were able to come to my rescue. They came and got me and Hannah and took the flat tire off the car and we went to Bob Lee's Tires in St. Petersburg. The person who replaced the tire recommended that I keep the flat and bring it back to Hubcap City, where we had gotten the tires back on June 5th because whoever mounted this tire had split it in the mounting process so it was their error.

I got a used tire to do until I can get by Hubcap City and Croft, Leilei, Hannah and I all headed back to our car with a short stop by Dairy Inn for root beer floats and ice cream cones.

Big Sister, Hannah

2006-08-11T22:30:00.000-07:00

I went with my parents Saturday to Lake Wales/Winter Haven to pick up Hannah from my cousins. Hannah was very sweet to watch with her cousins. She would come in from playing with "the boys" (my cousin Jenny's sons, Quinton and Chance, and my cousin Marcy's foster boys, Kyle, Cory and Harley) and would just point out the door at them and simply say, "The boys". That was her little tattling technique. She wouldn't say what they did or why she was upset. She'd just tell us who to blame and then run out to play with them some more. Whenever she says Chance's name, she changes her tone to a coaxing little song... "Cha-ance".

Sunday morning, we went to church for the first time since the C-section. It was hard at times since there were some people who still didn't know about our loss but it felt good to be in church again.

After church, we took Hannah to see Kyle in the NICU. She seemed a little confused at first but then she looked down at Kyle from Chris' arms and said, "Hi, Baby Kyle" and when we left she said, "Bye, Kyle" and skipped down the hall saying, "Big SISTER!" just like on her Big Sister Dora DVD.

She went with me to the NICU a couple more times during the week, each time looking at Kyle from a step stool through the incubator and saying, "Hi, Baby Kyle".

Baby's First Kiss

2006-08-04T18:00:00.000-07:00

Last night (8/3), I went with my parents to visit Kyle. When we arrived, Kyle was positioned on his belly, looking quite comfortable. He kept moving his legs around like he was trying to crawl away. It was so good to see him wiggling around. We had really good timing for showing up because the nurse, Amber, was just getting ready to do "hands on" with Kyle, which is where the nurse changes the diaper and does stuff like suctioning and weighing. She lifted the top of the incubator and we were able to take some good pictures of him while she took care of him. Kyle opened his eyes wide open while Amber changed his tiny little diaper (see picture below), trying very hard to see what she was doing. Before she could quite get the clean diaper on, our little comedian started peeing. Kyle's color looks really good and he's doing better on the regular ventillator. Before we left, the nurse asked if I'd like her to take the side of the ventillator down so I could give Kyle a kiss! Definitely YES! So I gave Kyle his first kiss before saying goodnight.

Kyle's Lungs

2006-08-02T19:45:00.000-07:00

Kyle's been keeping everyone on their toes the past couple of days. Yesterday I went to visit Kyle at the NICU and met his new neonatologist, Dr. Sharon Brooks.

Monday afternoon, Dr. Brooks put Kyle on a special high frequency ventillator because his lungs were not showing improvement. The high frequency ventillator shakes Kyle slightly allowing his lungs to more easily take in the oxygen. When Chris went to see him Monday night, he mentioned that Kyle kept moving his mouth like he was trying to get the breathing tube out.

According to the neonatologist, late Monday night Kyle had been rejecting the new ventillator so much that they had put him on a medication called Vecuronium to paralyze him. Since this medication may cause pain, they also began him on Fentanyl for the pain. So when I went to see Kyle yesterday he was completely still, not so much as twitching. It was very strange to see him like that but his monitors showed a very even heartbeat and blood pressure which was reassuring to see.

They were concerned that when they put Kyle on the high frequency ventillator it seemed to effect his kidney function and he was not producing as much urine as he should. They put on a foley cathetar to monitor his urine output. They were also concerned that he seemed to be fighting some kind of infection so they began administering an antibiotic just in case and took several cultures to check for infection.

The doctor was most concerned, though, about Kyle's lungs. She showed me his chest X-rays since day one. His more recent X-rays show a "honeycomb" pattern to his lungs which is a sign of http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=35017. She explained that the light spots on Kyle's lungs (which were in patches all over) were air pockets of the lungs that were not functioning. She said that the ventillator was meant to help correct this problem and improve his lungs but he was rejecting the ventillator.

I asked Dr. Brooks if there was any medication to treat this lung problem and she said that Coricosteroids have been used in the past for treatment of lung disease in premature infants with great success. However, as of a year and a half ago, they stopped using steroids on infants except as a last resort. They found connections between the steroids treatments and later neurological problems. Though most cases were minor, there was a possible link between the steroids treatments and certain cases of Cerebral Palsy. Dr. Brooks offered me literature on the risks of Corticosteroids and said that if Kyle's lungs did not improve on the ventillator within 48 hours, she would offer the option of using the steroids for treatment.

This afternoon, I visited Kyle again and spoke to the nurse practitioner on duty. Kyle had continued to reject the high frequency ventillator and was having difficulty with his kidneys as a result so they took him off the high frequency ventillator and put him back on the regular ventillator. His saturation levels improved and they were able to bring his ventillator down to 30 breaths per minute (which is much better than he was doing just before they switched him). They also took him off the Vecuronium but he was still not moving when I went to see him because it was draining from his system. His kidney function had already resumed normal activity and he was peeing like a champ. They got his labs back and one culture showed positive for Staph Epidermis but another culture showed negative for the same infection so they were continuing the antibiotics just in case and they took more cultures. If he does have an infection, the antibiotics should be able to treat it. His head ultrasound also showed normal which means that the use of Heparin previously did not cause any bleeding on the brain. So, basically, Kyle was looking really bad yesterday but is looking much better today!

We still may need to resort to the steroid treatments at a later time but at this point Kyle is responding well to the ventillator.

2006-08-02T17:30:00.000-07:00

Update on Chris

2006-07-31T15:40:00.000-07:00

Wednesday (7/26) morning, Chris went to see a new urologist about his kidney stones. This new urologist was surprised to see that he had done an IVP X-ray for the kidney stones. He remarked that IVPs are not very clear and insisted that Chris have a CT Scan, instead. He was also surprised at the frequency Chris has been getting the kidney stones and says that as soon as this kidney stone is treated, he's referring Chris to a nephrologist for prevention. This was a nice change from Chris' previous urologist who would use multiple treatments to break up the kidney stone and then send Chris on his way without any information on prevention. We were beginning to think that we were just a paycheck for him.

Wednesday night and Thursday morning were very painful for Chris and he wasn't able to return to work Thursday as he had planned. Thursday afternoon, he passed two rather large fragments and he felt much better. He was able to return to work Friday relatively free of pain. Unfortunately, without the pain of the kidney stones distracting him and with many offers of sympathy from co-workers, Chris felt the loss of Eric more keenly than he had been able to before.

Update on Kyle

2006-07-31T15:25:00.000-07:00

Kyle is still in the All Children's Hospital NICU and the doctors say that he will most likely stay in the NICU until at least his scheduled due date of October 14th.

Wednesday (7/26), Chris and I went to see Kyle after my one week follow-up visit and were happy to find out that they had started him on breastmilk. He was only getting 1cc per every three hours but it was something.

Thursday (7/27), the doctors at All Children's put in a PICC line and removed the umbilical line. This was done for more long-term treatment. When my sister-in-law, Fran, took me to see Kyle, he was not at all happy about all the poking and prodding they had done. We're not able to hear his cries since he has tubes in him and his lungs are so tiny, but his expression howled volumes! The nurse had placed warm packs on his legs to warm them up. She said that it's common after having the PICC line put in and the umbilical line removed for infants to have leg spasms so the warm packs were to help with circulation in his legs.

The neonatologist, Dr. Stone, explained to me that Kyle had slight lung disease. She said it was common for preemies and just meant that he'd have to be on the ventillator longer than they had hoped. They were still going to continue trying to wean him slowly off the ventillator. I know that when she told me I must have looked panicked because that's how I felt but she assurred me that it was nothing as serious as with Eric and was just something they were keeping an eye on to be sure it didn't get more serious. Since Dr. Stone was the one that told me of the seriousness of Eric's condition, I trust her and know that she would inform me if there was anything immediately life-threatening.

Thursday evening, Dr. Stone called to tell me that one of Kyle's legs had not stopped spasming. An ultrasound of the blood vessels revealed that he had a blood clot in the leg. They called in a hemotologist (a blood specialist) who recommended a small dose of Heparin be administered. Dr. Stone explained that there was a possible risk that Heparin could cause bleeding on the brain so they were using the smallest dose possible, but without the Heparin Kyle could lose function of his leg. She assured me that they would be watching him very closely on the Heparin. I did not sleep well that night and was very relieved when the nurse practitioner called the next morning to inform us that the blood clot in Kyle's leg had broken up and they were now only concerned about tiny clots in a couple of his toes. They were continuing the Heparin to hopefully save the two tiny toes. I was relieved to know that he would not have to lose function of his entire leg, even if he does lose function of two toes.

The nurse practitioner also informed me that the Echocardiogram performed that morning had revealed that one valve of Kyle's heart that opens at birth was still open. She explained that the valve usually closes earlier than this but it was normal for preemies for it not to. She explained that another valve like this one had closed already which is really good. So, like with his lungs, this is nothing immediately life-threatening - just something they will keep an eye on for change.

When Chris and I went to see Kyle Friday night, his two littlest toes on his left foot were still very dark but I was happy to see that the rest of his leg had good color and he was looking pretty cosy and content. The nurse let me hold the small syringe of breastmilk to feed Kyle through a small tube. It was such a small thing but it felt good to take any part in his care. I'm looking forward to when he can be taken off the ventillator and I can hold him in my arms.

Milk and Money

2006-07-31T14:30:00.000-07:00

After having no luck pumping milk since the C-section, I was thrilled when Monday and Tuesday, my milk finally came in. I had wanted to breastfeed both boys, despite many remarks from others that I would most likely give up breastfeeding pretty quickly with twin boys, so I had been disappointed that I wasn't able to get milk in for even one. It was even a source of pain for me that I wasn't able to provide that nutrient for them even though they weren't able to drink it yet. So when my milk finally came in, I felt a rush of joy. Since I breastfed Hannah, this was finally something that felt normal and right about having a newborn. I wasn't able to feel labor for my baby and I'm not yet able to hold my baby but at least I can give my baby the nutrients he needs. (FYI: For those that don't know it, suggesting that a mother-to-be will likely give up breastfeeding is not a source of comfort or support. If a mother CANNOT breastfeed or DOES give up breastfeeding on the other hand, telling her that "it's okay" IS a source of comfort and support.)

Tuesday night, while I was visiting Kyle with my parents and Chris was home in pain with the kidney stones, Chris received a call from his supervisor at work with some much-needed good news... He would be receiving bereavement pay for Monday, Tuesday and Wednesday. This news lightened the load some since we had thought that he would be getting no pay for these three days and I'm still out of work.

Sad Tasks

2006-07-31T14:15:00.000-07:00

Monday (7/24) morning was a sad day since we had the task of making arrangements to lay to rest our dear little boy. Chris was still in pain from his kidney stones and I was still in pain from the C-section but the pain of Eric's death was still greater. Unfortunately, we did have to consider cost as we searched the web for information on burials, cremations and funerals. We decided to go with cremation by the Anderson-McQueen Funeral Home. We made arrangements to meet with them the next morning.

Tuesday (7/25), we met with a funeral director who discussed all the options with us. We could have a sort of viewing right before his cremation where they would place him in a bassinet or even hold him in a rocking chair but we turned down this offer since we had already said "goodbye" and our little Eric was no longer in the frail little body but was now in Heaven. We arranged for the release of the body from All Children's Hospital and filled out forms for the death certificate and obituary. No parent should ever have to make arrangements for their child to be laid to rest but the funeral director helped to make the task a little easier. He even arranged for the urn to be a tiny keepsake blue baby bootie.

Chris and I intend some day to have Eric's remains buried properly with a headstone but until we are ready for that, I believe the keepsake will be easier to look at than a plain, cold piece of pottery. I requested that Eric's footprints be taken for a necklace called a "Thumbie" to be made for me at a later time.

As we left the funeral home Tuesday afternoon, I felt as though my load had been lightened quite a bit. The arrangements were no longer looming over my head as a constant reminder of Eric's death. I felt more free to celebrate the life still with us, Kyle, and to celebrate that we had been able to have little Eric for at least the short amount of time we did.

A Sweet Gesture

2006-07-31T13:45:00.000-07:00

Sunday night, we went to see Kyle with my parents. When Chris left the NICU to trade with my father (only two visitors are allowed by the bedside at a time), the nurse came over to me and gave me a small gift. She handed me a small piece of clay with two sets of foot imprints - one next to beads that spelled out KYLE and the other next to beads that spelled out ERIC. The nurse said that another nurse had apparently done the imprints early the day before but she wasn't sure which one (we've found out since then it was a nurse named Valerie). Through my fresh tears, I asked the nurse to please thank the other nurse if she found out who it was. The small gift meant so much to me, especially after the sorrow of the night before.

Hello and Goodbye

2006-07-25T19:41:00.000-07:00

July 19, 2006 we welcomed Frederic "Eric" Dean Foreman and Kyle Robert Foreman into the world, ahead of schedule.
July 22, 2006 Eric was welcomed into Heaven.

We celebrate our short time with Eric and Kyle's growing strength and appreciate all the thoughts and prayers.

.................................................

Wednesday, July 19th, I was feeling uncomfortable again already but as I waited with Carey for my appointment with Dr. Raimer, we were distracted with plans for the next day when she would be flying back to Indiana, and for my next few weeks before the twins' birth. But our thoughts were grounded very quickly when Dr. Raimer looked at the ultrasound and her face got very serious - something was wrong. She explained that they were going to transport me directly to Bayfront from the doctor's office and would likely deliver the babies by C-section either that same day or shortly thereafter. Dr. Montenegro was to meet me at Bayfront.

While the nurse wheeled me over to Bayfront in a wheelchair, Carey called Chris to inform him that he needed to leave work and meet us at Bayfront right away. I was brought to the assessment room at Bayfront where Dr. Montenegro looked at another ultrasound and confirmed that I would need to have a C-section immediately. I tried to remain calm while they prepped me for surgery but C-section was my greatest fear. They adminstered a spinal epidural and my feet and legs immediately started going numb. I felt tears well up as they strapped my arms out to the sides. I was afraid and no one could tell me if Chris had made it to the hospital in time. Just when I felt the panic build, a young doctor came to my side and told me that Chris had arrived and was getting gowned up for coming in. Carey had been put in a gown and mask just in case Chris didn't get there in time but at that moment I needed Chris.

Chris stood by my side behind the barrier the whole time, comforting me and assuring me that everything was looking okay. When they began delivering the twins, Chris looked over the barrier and saw "Twin A" being delivered. I heard a whimper so tiny that I didn't think it was his cry until Chris told me it was. His lungs were so tiny that he could not give a full cry. As they delivered "Twin B", they found that the cord had been tangled around the two boys and actually tied in a knot. I didn't know until much later, but at the time of delivery, "Twin A" did not have any blood in his cord. Moments later and both boys would have been lost because of the tangled cord.

"Twin A" was 1 pound, 1 ounce born at 3:46pm. "Twin B" was 1 pound, 6 ounces born at 3:47pm. They were both rushed immediately to All Children's Hospital next door and Chris followed them there while the doctors gave me something to make me sleep. I don't remember anything after until late that night. They let me know when I woke up that both boys were stable, though they both had numerous problems and were very tiny. I was anxious to see them but I had to wait until the next day. While everyone was wanting me to decide on their names, I refused, insisting that I must see them first to be sure the names fit.

Thursday morning Carey and Chris wheeled me down to All Children's to see the boys but unfortunately we were only able to see "Twin A" since the doctors were doing rounds in the section of the Neonatal Intensive Care Unit (NICU) with "Twin B" so I could not decide still on the names. "Twin A" was a little frightening to see due to his small size. They had a blindfold covering half his face since he was under the bililight to treat his jaundice. They also him on a ventilator and IV and there were numerous tubes and wires on him. But he was my baby and beautiful to me. The nurse explained that their main concern right now was that he had not produced any urine yet and they could not determine if he had any kidney function but they said that it could just be temporary due to the twin-to-twin transfusion syndrome. They also had numerous concerns that were normal for any premature infant but I felt confident that he would fight the odds and be fine.

Later on, after Carey had said a reluctant goodbye and headed for the airport, Chris took me down again to see the twins with our friend, Jenn. This time I got to see both of them and felt certain of the names. "Twin A" was my little "Peaceful Leader", Frederic ("Eric") Dean, and "Twin B" was my "Handsome, Bright Fame", Kyle Robert.

The neonatologist took some time to talk to me and to Chris and explained that little Eric ("Twin A") had still not urinated and they were concerned since it had been about 24 hours but he could still turn around if he urinated in the next couple days. She also explained that Kyle ("Twin B") was having the opposite problem, where his bladder was filling more than it should and they were also concerned that his heart had a "thickened wall" caused by the excess blood from the twin-to-twin transfusion but with all their concerns, both boys were stable and looking beautiful.

Shortly after bringing me back to my room at Bayfront and saying goodbye to Jenn, Chris had to leave for home since his kidney stones were causing him a lot of pain. I felt pretty good with the nurses taking care of me and knowing that the twins weren't far away from me. My parents came by later on and brought me down a third time to see the boys. We took turns at the boys' bedsides since only two visitors are allowed by a bedside at a time. So my mom and I took pictures and cooed over one while my dad took pictures and cooed over the other.

I slept well Thursday night knowing my boys had names and were stable but Friday came with dark news and plenty of tears.

Friday afternoon, Chris was unable to make it out to the hospital. He was in pain from the kidney stones and was on medication that didn't allow him to drive. So his mother came to keep me company and to bring me down for a visit to the NICU. I was in a happy mood on the way down there. Though there were concerns, I felt certain that my boys were fighters. But when the neonatologist came to speak to me, the news was not good. Eric had still not urinated and it was not looking like he had functioning kidneys. The fluid in him was building up around his other organs and if he couldn't urinate, the fluid would eventually be toxic in his body. I tried to be optomistic but the doctor informed me that if his kidneys did not begin to function on their own, there was nothing that could be done. He was too small for a transplant or dialysis and the only option would be to wait for his body to give up.

Chris' mom, Marcy, brought me back to my room sobbing. I was no longer optomistic. I was no longer certain that he could fight the odds. If his kidneys were not functioning, he wasn't equipped to fight. Marcy left so that she could pick up Chris' sister, Rachel, from the airport later that night. Rachel has been in the Army in New York and is scheduled for deployment to Iraq soon, but she got special leave in order to come and be with us.

I called Chris but he was still unable to make it to the hospital because of the kidney stones and pain medication. I called my parents and asked them to come over to be with me. My sobbing was uncontrollable until I called my sister. She comforted me and reminded me that there was still a chance that Eric might urinate and turn things around. She also reminded me that I very nearly didn't have Eric at all - or even Kyle, for that matter - and they had proven to be fighters already.

My parents came later and brought me down again to see the boys. This time, I spent almost the whole time by Eric's side and I made sure to touch him as much as I could. I wanted to be sure to have memories to hold onto. The nurse took him off the bililight and took his blindfold off for a little while so we could see his face better. Eric gripped his tiny little knuckles around my finger and blew tiny spit bubbles. He even curled his lip into a slight smile for me. The nurse explained that he still hadn't urinated and his color was starting to look dusky, which was a sign that the fluid was building around his other organs.

Friday night was hard for me. The uncontrollable sobbing came often. The night nurse, Angela, came in to check on me and asked about the boys. When I told her, I started crying again and she scooped me up into her arms and began crying and praying with me. It was very comforting.

In the middle of the night, All Children's called and for a moment, I got my hopes up. I had told them to call me if Eric urinated, no matter what the time. But when the nurse spoke, I knew that it wasn't good news. In fact, it was very nearly very bad news. Eric's heart rate had gone down to critical and they had manually stabilized him using a bag. They had called in the "code team" but he had stabilized and they were able to put him back on the ventilator. It was comforting to know that I was close enough to get there in a matter of minutes if he had not stabilized. I dreaded the next day because they were planning on discharging me.

Saturday morning, Chris packed Hannah up to go to my cousin's house in Lake Wales for the week. My parents drove her out there. Chris' mom picked him up shortly afterward to take him to Bayfront. Meanwhile, the doctor told me they were discharging me but the nurses had said I could stay until 10 pm if I needed to. I called Ronald McDonald House to arrange that I could stay there that night in order to be close to the boys at All Children's. They said I needed to be there by 9 pm to check in and I needed to have someone stay with me or I needed to have the post C-section staples removed. The doctor said they could go ahead and remove the staples without any problem.

Chris arrived with his mother and his sister, Rachel, around lunchtime so we ate our lunch quickly before heading down to the NICU. My heart sank as soon as I saw Eric. It was clear that the night had not been good to him. His tiny body was swollen with fluid and his color had turned such a dark grey, he was almost black. I asked to see the neonatologist. He confirmed that Eric was not showing any sign of improvement and would only be with us for a very short time. They had started him on pain medication. Chris and I cried over our precious little one. Our hearts were both breaking.

Though our other small boy was looking a lot better and the nurses told us he had even peed his bed when they had changed him earlier, we were not comforted. The neonatologist informed us that we would need to decide whether we wanted to have the hospital perform code on Eric if he started to fade or if we wanted to take him off the medications and tubes that were keeping him alive and say goodbye to him. Chris and I agreed that we didn't want to prolong our little boy's pain but I insisted we wait for my parents to be there. We called my mom and dad and asked them to rush back from Lake Wales.

I decided that I wanted to return to Bayfront long enough for them to discharge me and cancel my reservation at Ronald McDonald House so I could stay as late as necessary in the NICU. I was determined not to leave Eric alone, afraid that he might die with no one there. Marcy promised to stay by Eric's side and make sure he was not alone while I settled things at Bayfront.

My discharge took longer than I would've liked because the nurse that was on duty was not aware of my situation and did not understand the urgency. I had to explain the situation which took away all of my strength in order for her to understand that I needed the staples removed, even though I was not staying at the Ronald McDonald House (RMH) that night because I may need to stay at the RMH the next night. She had wanted a definite answer as to whether or not I'd be staying at the RMH and I tearfully explained that I didn't know if my infant would be alive the following day so I couldn't be sure. She finally removed the staples and gave me my discharge papers and we returned to the NICU. By that time, my parents, Chris' dad, and Jenn had all arrived.

Once we returned to the NICU, I felt an odd peace. In a few moments, I would be able to hold my precious little one and give him the best thing I could - an end to the pain while surrounded by love.

We had to wait for the chaplain and the neonatologist and I sat with Kyle for a moment while we waited. Kyle looked so strong and healthy compared to his brother and his nurse assurred me that he was indeed stronger and steadily getting better. It was comforting but after a moment, I had to return to Eric's bedside and face the hardest event of my life.

The NICU waived the rules and we all stood (me, Chris, my parents, his parents, Rachel and Jenn) by Eric's bedside. They allowed me to hold his tiny body cradled in my arms while the life support was still on him and when they removed the life support, we all brought him into the chaplain's office to say goodbye. We all said goodbye and held him during the few minutes and then Eric's face spread into a giant smile as he breathed his last breath.

The neonatologist pronounced time of death and while I sat there crying, the other women cleaned Eric up with the help of the nurse. They provided a small box for keepsakes like Eric's hospital bracelet and blood pressure cuff and such. One of the nurses had even made a small bracelet from ribbon and beads that said "ERIC". The chaplain spoke a few words of comfort and we all left the hospital feeling drained and exhausted.

I know from his smile in the end that he had met the welcoming committee - all the loved ones who have passed before and I know that he was no longer in pain. He no longer needs kidneys where he is now and I know that my grandfather and Chris' grandfather, as well as my Aunt Sandie and many others, are all holding him now and he's in good hands. Chris and I miss him dearly and will always hold a special place for him in our hearts.

5th Amnio Reduction

2006-07-17T10:54:00.000-07:00

July 17th another amnio reduction was performed removing 4 liters of fluid. I called ahead to make sure that Dr. Raimer would be the doctor on call and they put me up in a labor and delivery room again. Dr. Raimer had them administer Demerol before they began the reduction to ensure the least discomfort. The Demerol also kept my uterus relaxed and made the reduction quick and painless. I didn't even have any contractions after the reduction and they discharged me the same day.

4th Amnio Reduction

2006-07-11T09:45:00.000-07:00

Sure enough, after a night with no sleep, Monday morning I went in to the hospital again for yet another amnio reduction. This time, however, was a lot more pleasant than last time. First of all, Dr. Raimer was on call instead of Dr. Prieto. She had performed the first amnio reduction, which had been virtually painless so I felt good about her doing this one. As I walked up to the antepartum nurses station, I right away saw Dr. Raimer. Luckily, she wore a nice white lab coat with her name embroidered on the front because I didn't recognize her (I was pretty out of it during the first amnio reduction). They checked me right in to a birthing suite instead of one of the broom closet antepartum rooms and the nurses were all helpful and attentive.

They didn't give me any problem about drinking juice and water or taking my regular prescriptions before the procedures and even brought me some crackers in case I got hungry beforehand. Last time, I had to wait 9 hours before they gave me approval to eat, drink or take my prescriptions!

Once I got settled into the birthing suite, I noticed the prep table had only one 1 liter bottle for fluid so when the nurse came in I mentioned that she might want to get more since I had been averaging 5 liters per a reduction. She went and got a few more of the larger 2 liter bottles.

When Dr. Raimer came in and started the procedure, I was a little nervous because the last one had been so incredibly painful but once she started I was pleased to find that it started as comfortable as the first one. A little ways into it (almost 2 liters into it), though, and it started hurting again so I let her know. She pointed out on the ultrasound screen a bulge around where the needle was inserted and explained that my uterus was contracting around the needle. She also ordered the nurse to get me a shot of Morphine for the pain and had the resident assisting her adjust the needle to a more comfortable angle. Before the morphine was even in my system, the pain almost completely went away from just adjusting the needle. I was so glad to see that Dr. Raimer was attentive to my discomfort and quick to relieve it.

As with the last couple of reductions, the membrane kept brushing past the needle and snagging because of the vacuum. But, rather than just wiggle the needle up and down to un-snag it as Dr. Prieto had done (very uncomfortable), Dr. Raimer removed the vacuum just long enough to inject a few air bubbles through the needle using an empty sterile syringe, pushing the membrane away. It was kind of funny to see the little air bubbles on the ultrasound screen and watch them get sucked back up into the vacuum (babies' first bubble bath).

Dr. Raimer and the assisting resident continued to have light conversation with me rather than around me during the entire procedure, informing me the whole time of how the procedure was going. Dr. Raimer even mentioned that they only had to use one tap because according to my chart, they suspected that during one of the first amnio reductions, a small hole may have been made in the membranes dividing the twins' sacks. This would explain why the fluid has been even on both twins since after the first amnio reduction. She seemed to think that I had already been informed of this detail, which I had not. I was quite surprised at how quickly the procedure was over with, especially when I saw that the third 2 liter bottle was actually FULL. They removed 6 liters this time!

Almost as soon as the needle was out and they were cleaning me up after the amnio reduction, I started feeling the effects of the Morphine combined with nearly 24 hours without sleep. I felt the relief of having the 6 liters removed. I could breathe easier than I had in days without the pressure of so much fluid. I was perfectly comfortable and happy as they put in my IV and gave me a shot of Betamethasone (a steroid to help the twins' lungs develop in case they need to be delivered before term).

I mentioned to the nurse that I liked Dr. Raimer a lot more than Dr. Prieto and how impressed I was by her. The nurse looked as though she agreed with my opinion of Dr. Prieto but only said, "She should know what she's doing. She's got children of her own so she's been there." My sister asked how many children Dr. Raimer had and the nurse said "6 or 7, including a set of twins".

As soon as I'd slept for a little while, the contractions had stopped, and the Morphine had worn off, they gave me a tray of food before discharging me around 8:30pm. It was nice not to have to stay overnight for a change. I had worried that they would keep me overnight because the contraction monitor was picking up the twins' movements as they pushed themselves against where the monitor was and it made it look like I was still contracting. But they let me go with instructions to take the Procardia every four hours instead of six and to go to the Dr.'s office this afternoon (Tuesday) for a second injection of the Betamethasone.

Last night I had no problem falling asleep and staying asleep all night, only waking up long enough to take my prescriptions during the night.

The Other Foreman

2006-07-10T03:30:00.000-07:00

All my posts have been about me and Hannah and the twins so here's an update on the other Foreman, Chris:

Chris has been battling kidney stones yet again. He had an appointment with the new doctor last Monday and was scheduled for an IVP Friday morning. An IVP is basically an X-ray where they inject dye into the system beforehand to show more detail. According to the IVP results, he's got a kidney stone partially blocking on one side so he needs to schedule an appointment with a urologist as soon as possible. We're going with a different urologist this time around. Dr. Krauss at Bayfront has treated him previously but doesn't seem to be big on the prevention of kidney stones - just the treatment. Chris has had kidney stones about every 4-6 months on average since we got married and all we know is that they are caused by a hormonal imbalance that makes it so his body doesn't break down calcium like it should, so instead it builds up and creates stones in his kidneys.

I'll try to update the blog as we find out more.

26 Weeks

2006-07-10T02:20:00.000-07:00

Well, last Wednesday I had another appointment at Dr. Prieto's office. This one was actually officially my "transfer of care" appointment so I thought more questions would be answered and I'd get a little more time actually talking to the doctor (or at least the nurse practitioner) about my current conditions. However, other than taking my vitals and asking the same family medical history questions that the hospital asks, the appointment was just like the other appointments. When I tried asking the nurse practitioner questions about my bed rest and Cholestasis and such, she just said "Ask Dr. Prieto when you see him".

So after yet another ultrasound (during which, Dr. Prieto mumbled to the ultrasound tech as usual and barely glanced in my direction), the doctor said that we would go ahead and plan for another amnio reduction next Thursday after another ultrasound appointment and began to leave the room. This time I stopped him and said, "I have a few questions, actually."

I told him that I had researched Cholestasis on the web and found information leading me to believe that it is rather serious and I was especially concerned that one of the side effects of Cholestasis is a vitamin K deficiency that can cause the mother to bleed out after giving birth. I mentioned that this may be of great concern since a couple days before I had bit lip and it had continued to bleed for a half hour! I asked if there was any way I could take a vitamin K supplement and his response was a slight roll of the eye and, basically, that he didn't see any reason for it but if I really wanted to try it, I should just get it over-the-counter. (I learned later on that you cannot get vitamin K supplements over-the-counter. They are prescription only.)

Then I told him that I would like to know what type of bed rest I'm on since a nurse at Bayfront said that there are several types such as complete bed rest, modified bed rest and pelvic bed rest. The doctor actually chuckled at this but the nurse in the room timidly said that there were indeed different types of bed rest so the doctor clarified that I'm "on bed rest but not bed ridden". (So clear!) When I tried to get a little clearer explaination, he basically said that I'm on bed rest to prevent preterm labor but I'm most likely going to have preterm labor anyway. (Again, so clear.)

As I was leaving the doctor's office I stopped to talk to the receptionist. I had received the Medicaid cards for myself, Hannah and "Baby A of Foreman" and Baby B of Foreman" so I asked how that worked since I had Aetna as my primary insurance. Turns out, this doctor's office doesn't accept Medicaid.

Friday morning I received a certified mail from my work saying that I was terminated effective July 7th and my benefits would continue to the end of July. They had warned me of this a few weeks ago but I was hoping that something would change like I could return to work. I know many of you are thinking, "They can't fire you for not working if it's a medical reason". However, Family Medical Leave Act (FMLA) only protects you if you have worked for the employer for a full 12 months. I started January 30th of this year. So after all this baby drama is over and the twins are healthy and outside my belly, I'll be looking for a new job. I may be able to get a job for the same company but by then they'll definitely have filled my current position and I really liked the department I was in.

On Friday afternoon, my sister brought me and Hannah to the WIC office to sign up for assistance. I wasn't feeling my best after sitting up for over an hour and a half but when we left, I had WIC vouchers for three months. Hannah and I each had to have our fingers pricked to check our iron levels. Hannah took it like a champ, not even crying for a second and her iron levels were perfect. Mine however were slightly anemic and I was told I need to increase the iron in my diet.

Now it's the middle of Sunday night/Monday morning pretty much and I'm just waiting for time to go by. As soon as the hospital registration office opens, I plan to call them and ask how to go about switching doctors considering my insurance coverage ends the end of this month and Dr. Prieto doesn't take Medicaid... and I don't really like Dr. Prieto anyway. My only concern is that I don't know how many other doctors can perform amnio reductions since that was apparently the reason Dr. Igel had needed to transfer my care in the first place.

I'm pretty sure I'm going to need another amnio reduction today. The entire day I've been uncomfortable and short of breath from the excess fluid. I just hope I can work it so that Dr. Prieto isn't the one to do it this time.

I'm having a hard time not getting discouraged with all that's happening. My sister leaves again for Indiana on July 20th and I'm not sure what I'm going to do with her gone. We've had to take Hannah out of daycare during all this because it costs too much and I'm not sure how I'm going to care for her alone during the days. My mom had been helping before Carey came down but my mom starts a new job today (Monday). At least her new job is really close to here so she can actually come by on her lunch breaks, which should help some.

Growing... and Shrinking Again

2006-06-30T15:17:00.000-07:00

At my doctor's appointment yesterday, the doctor saw that my amniotic fluid levels were again far above normal. He went ahead and sent me next door to Bayfront for my third amnio reduction! I was actually glad because the fluid was starting to make me uncomfortable again and I would rather go in for the reduction before the excess fluid causes contractions.

They set me up in another broom closet sized room. (It turns out all their antepartum rooms are that small because those used to be their labor rooms before labor and delivery were combined in one room.) Carey and I thought to get before and after shots this time to show you all how I shrink down after the amnio reductions.

Dr. Prieto performed the amnio reduction again, removing 4.5 liters of fluid this time. It was even more uncomfortable than last time. After the procedure, I was in quite a bit of pain and the doctor explained that since my uterus has been expanding and contracting so much this pregnancy with the amniotic fluid changes, I was experiencing a muscle ache in the uterus. This made sense since it felt exactly like someone had stuck a booster shot or another shot to the muscle right into my belly! - Not pleasant. The doctor assisting Dr. Prieto, Dr. Needham, described it very well as a charley horse in the uterus.

All three doctors who were on the floor at the time of my amnio reduction were in the antepartum room with me but shortly after the procedure was finished, another patient came in with more urgent needs and they all left to attend her. Unfortunately, they left in such a rush, the nurse had to chase them down to get the order for pain killer (Toradol).

Shortly after they administered the Toradol, the uterus pain went away but I was having mild contractions. They gave me an extra dose of the Procardia and I waited for the go ahead to eat and drink, which I didn't get until around 9:00pm. They kept me overnight for observation to be sure that the contractions had stopped and discharged me this morning around 10:00am.

Bed Rest

2006-06-23T15:31:00.000-07:00

Just a couple weeks into bed rest and already sick of it.

I filled out an application online for temporary government assistance on Monday and was surprised to get a call back Tuesday from Kristy at the Department of Children & Families. They still needed some forms faxed to them (a copy of my medical insurance card, copies of Chris' pay stubs, a letter from my employer saying I am not working at this time and a doctor's note confirming that I am pregnant) but she said that we were eligible for food stamps and medicaid, though not for the cash assistance program. This should be very helpful during the time I am out of work and Kristy says that the medicaid will cover any expenses that my medical insurance does not (which could be anywhere around $1500.00 in co-pays and deductibles under our insurance plan) and will cover the twins' health care from birth up to a year.

My mom came over every day last week to help out and has helped Hannah take an interest in potty training. I have been wanting to work with Hannah on potty training for some time now but have been unable to devote the time and energy necessary. Hannah has been keeping her diaper dry (except when asleep) for the most part and each time she uses the potty emerges from the bathroom with a victorious shout of "I did it!" and claps. At this rate, she will be completely potty trained very soon! I'm very proud of her.

I received a call from HR and Benefits at Crum (where I work) and they ever so casually explained that since short term disability did not begin until July 1st and I have not been with the company a year yet, unless I returned to work before July 5th, they would start processing my termination. I was not happy about this news since I have enjoyed working there but had no options available. When Chris came home, though, he said that there had been a meeting at work (Chris works at the same place) and the big shots (including the owner of the company) were trying to find a way to help us out and from the sounds of it, did not want to lose me. It's still pretty much up in the air but I'm glad to know that there are those who are pulling for us at work.

I went in to my first appointment at the new OB's office last Thursday. There are three doctors at this office: Dr. Raimer, Dr. Montenegro and Dr. Prieto. I was feeling stretched almost to the limit again and was not exactly comfortable as I waited in the waiting room for almost an hour. Another woman in the waiting room says that this long of a wait is common. I spent the time talking to a new father of twins and a woman who is also expecting twin boys but was relieved when they finally called me back.

I saw Dr. Prieto and they did yet another ultrasound to check on the twins. Dr. Prieto said that my amniotic fluid levels were very high again but the fluid was now equal between the two twins and both twins were looking healthy. The doctor said that I still couldn't return to work and needed to schedule a routine fetal echo with All Children's Hospital's cardiologist, Dr. Huhta. He said this was just routine with any twin pregnancies. Dr. Prieto also said I need to come in weekly for ultrasounds from now on to keep a close eye on the amniotic fluid levels.

I had been experiencing itching in my hands and feet since my discharge from the hospital and the itching had spread to the rest of my body. When I had asked the nurse about it over the phone, she said I could take Benadryl for the itching but it hadn't been helping so I asked about the itching again. This time, they said that it might be a sign of a condition called Cholestasis so they gave me a scrip for blood work to test my bile acid levels and told me I had to fast from midnight before the blood work. I was eager to find out what was causing the itching and to make it stop so my mom looked up Cholestasis online as soon as we got home.

It sounded exactly like what I had so I decided to go for the blood work first thing in the morning. Unfortunately, I fell asleep pretty early in the afternoon and did not wake up again until after midnight so instead of fasting from midnight, I actually fasted from about 6:00pm so when I got to the lab, I was too light-headed for them to draw the blood (I almost passed out) so they told me I had fasted too long and to try again the next day (Saturday) at the one lab that was open on Saturdays. This time I made sure to eat something just before midnight and had no problem having the blood work done but I still had to wait for the results.

My sister, Carey, flew in to town around 11:00pm from Indiana with her kids and went to my parents house. The plan was that she would come over around 9:00am after dropping her kids off at her mother-in-law's.

However, late Saturday night I began feeling the tightness in my stomache that I had felt a couple of weeks before. I tried to just keep my feet up and relax, hoping it would subside and took my Procardia but the tightness continued and I woke Chris up at 4:00am on Father's Day to drive me to the hospital. I called the doctor and he said that he would inform the hospital that I was on my way and would most likely do another amnio-reduction. This actually sounded good to me because I remembered how much more comfortable I was after the first amnio-reduction and it hadn't been a painful experience.

When I got to the hospital, they set me up in a broom closet of a room. They had to move the bed in order to get the ultrasound equipment into the room! My dad and sister met us at the hospital and sat with us while we waited. I wasn't having very strong contractions according to the monitor and the nurse said that my cervix was closed but when the doctor arrived, he went ahead and ordered the amnio-reduction since the fluid levels were so high on both twins.

This time, the amnio-reduction was far from comfortable and I had to last through almost another 5 liters being withdrawn and this time they did a tap on each side to reduce fluid from each twin since the twins were even in their amounts of fluid. The doctor went ahead and ordered a chromosome analysis on the amniotic fluid from each side since they were removing the fluid anyway. The doctor said that I could most likely be discharged just a couple of hours later and I was happy to hear it, but shortly after the amnio-reduction, I started having rather intense and consistent contractions. The nurse checked my cervix again and said that I was dialated 2 cm so I was not going home that day.

They moved me to a regular labor/delivery room and started me on another medication to relax the uterus. I was still taking the Procardia but the Indomethacin can help stabilize the amniotic fluid as well as preventing contractions. They even put me back on the Magnesium Sulfate again. Shortly after they started the drip for the Magnesium Sulfate, the contractions stopped and things were looking better. My sister stayed with me at the hospital so Chris could go home and rest for work the next day.

The next afternoon, I was discharged after more ultrasounds since I was no longer contracting but they gave me a prescription to continue taking the Indomethacin for one more day and they told me to start taking the Procardia once every four hours instead of six. I was able to schedule the fetal echo at All Children's for Tuesday afternoon.

My friend, Lauren, came and picked up me, Carey and Hannah to go to my appointment Tuesday afternoon. It was a nice change getting to ride in a car with air conditioning. During my appointment (which ended up taking over two hours), Lauren and Carey took turns watching Hannah in the waiting room and sitting with me during the echo. It probably wouldn't have taken so long if the twins weren't so active. They kept dodging out of sight just when the tech was getting a good read on their heart.

Once Dr. Huhta had a chance to look at the results from the echo, he asked what prescriptions I was on and told me to stop the Indomethacin immediately - not to even take the one dose left. Turns out, Indomethacin can cause complications with the fetus heart and both twins were showing one chamber constricted. Dr. Huhta called Dr. Prieto's office to inform them that he was ordering me not to take the last dose of Indomethacin and had me schedule another echo for Thursday to verify that it was just the medication causing the problem.

Wednesday evening one of the ladies from our church came by with a delicious meal enough to feed all of us (me, Chris, Hannah, Carey and Caleb) and still have leftovers to eat the next night.

Yesterday (Thursday), as soon as my mom arrived to watch Hannah, my sister and I took off for All Children's for the follow-up echo. Dr. Huhta said that both hearts were looking much better now but they may schedule me for another echo later in the pregancy just to follow up. After the appointment at All Children's, Carey and I killed some time until my appointment at Dr. Prieto's office.

After yet another ultrasound, Dr. Prieto said that the twins look healthy and the fluid is even between the two twins and almost down to normal levels. I asked about the possibility of returning to work and he said that I can't yet but we'll see how I'm doing at next week's appointment.

They had the results back from the blood work and it confirmed that I do have Cholestasis so they gave me a prescription for Urso. He said that it's not a severe case and I should be fine since they'll be seeing me once a week anyway and can keep a close eye on my condition. Luckily, they say the only concern with this medicine is that it sometimes causes decrease of amniotic fluid so I shouldn't have any problems with this one. I'm looking forward to the itching stopping since it's been keeping me awake and driving me up the wall.

Who knows? Maybe I can make it to next Thursday's appointment without any trips to the hospital and maybe they'll let me return to work. This whole bed rest thing is not my cup of tea and is definitely making things tight financially.

What a week!!!

2006-06-12T02:10:00.000-07:00

Well, a lot has happened since Tuesday. Wednesday morning, I was feeling some tightness in the belly but figured I'd just mention it when I went in for my appointment at Dr. Igel's office. My mom picked me up and brought me to my doctor's appointment for 3pm. I was just meeting Dr. Igel's head midwife, Robyn Reese. Robyn was very optimistic during the beginning of the visit, saying how I could have her deliver the baby with Dr. Igel overseeing the birth and saying she didn't see any reason why I couldn't make it to term with the twins. Things changed, though, when she did the exam of my cervix. She basically said to forget everything she had just told me and to go directly from the doctor's office to the hospital. I was 1 centimeter dilated. She explained that there was low chance of survival for the twins if I delivered at 21 weeks and we needed to make sure I made it until at the very least 24 weeks.

My head was spinning as my mom drove me to the hospital. Chris got off work a little early to pick up Hannah and my dad and meet me and my mom at the hospital. While I checked in at Mease Countryside hospital, my mom and dad took Hannah back home with them.

The hospital set me up on IV with Magnesium Sulfate to stop the contractions. One of the nurses commented that I was laboring better than the laboring mothers. I was having strong, consistent contractions. After a while of the Magnesium Sulfate, they gave me a shot of muscle relaxer to assist the Magnesium Sulfate and an Ambien sleeping pill. They also did a bedside ultrasound, which showed that I had an abnormally high amount of amniotic fluid. The nurse said that the average count for amniotic fluid is between 5 and 20 but mine was at 60+! Before going to sleep, I heard the news report about a woman in Tampa who had been given an overdose of Magnesium Sulfate. It was not reassuring.

Chris' mom, Marcy, came to sit with me through the night so Chris could go home for a little bit and relieve my mom and dad. It was comforting to have Marcy with me since I was very uncomfortable and unsure of what was going to happen next.

Thursday morning I woke up still hazy from the Ambien to see Chris standing with Dr. Igel who explained that I was being transferred to Bayfront Hospital to Dr. Raimer's care. The doctor explained that the twins have Twin-to-Twin Transfusion Syndrome and what that means. I didn't really follow the explanation too well but I'm putting in a link to more information about this syndrome for you all to read. It all boiled down to: I needed to have an amnio-reduction done immediately.

While I was still half asleep, paramedics came in and transferred me from the hospital bed to a stretcher and transported me to Bayfront in a Critical Care Unit ambulance.

Shortly after arriving at Bayfront, my room was filled with doctors and interns and one doctor (who I later found out was Dr. Raimer) performed the amnio-reduction using an ultrasound to guide as they removed 5 liters of amniotic fluid from my abdomen! They kept offering painkillers but the procedure was virtually painless, though scary and bizarre.

Following the procedure, they kept me on IV and Magnesium Sulfate for a while and gave me a dose of Morphine to relax the uterus. They also gave me my Rhogam shot for my Rh negative blood type. Before long, the contractions had stopped entirely and I was feeling 100% better!

The doctors told me that it may be necessary to do another amnio-reduction or even transfer me to Tampa for a relatively new laser procedure but my ultrasound Friday morning showed great improvement and they took me off all the meds and even the IV. They had to keep me one more night for observation to be sure my amniotic fluids didn't build back up too quickly but Saturday morning the doctors said I was ready to go home... on bed rest. I have to take a medication called Procardia to keep my uterus relaxed and I have to schedule an appointment with Dr. Raimer's office for later this week.

I'm on bed rest pretty much until I deliver and apparently I will have to deliver at Bayfront (25 miles away from home) when the time comes. I am a little disappointed because I had heard rave reviews about Dr. Igel and the Mease Countryside facility and staff was very warm and comforting but Bayfront is better equipped for the possible complications that may arise and All Children's Hospital is right next door.

We appreciate all the thoughts and prayers that have gone out to us in this difficult time. We also greatly appreciate the offers for meals and help around the house. The journey's far from over. There's no telling how much longer until the twins deliver (the closer to 36 weeks, the better) and since I'm ordered on bed rest, we will have only one income for a while.

Please continue to pray for us as we still have numerous hurdles to jump. I will be calling around today to see if we can get on temporary WIC, CCC, etc. Hopefully we can get some assistance. We are going to need a new vehicle (preferably a minivan) before the twins come since our little Civic two-door won't fit two infant and one toddler car seats. We plan on trading in Chris' Mitsubishi truck but credit and down payment are still issues.

Mommy's 25th Birthday

2006-06-06T17:34:00.000-07:00

Yesterday was my 25th birthday and one I will not likely forget soon...

First, Sunday morning we awoke to find that our car had been stolen from our condo parking lot... Chris and I had planned on a fun afternoon with friends by the pool that day so after reporting the car stolen to the police and insurance company, we went on with those plans. There was nothing to do but wait and hope they found the car. We now know the importance of theft coverage on the insurance too little too late.

Luckily, around 4:00 we got a call from the police department that they had found the car... unfortunately, it was found without any wheels. The thieves dumped our car in Pinellas Park, taking with them all four wheels, the spare tire, the tire jack, my access badge from work and a large box of diapers for Hannah that we had bought Saturday night! They had also clearly rifled through our glove compartment. An information card with our bank account numbers and routing number was sitting on the passenger seat.

The next morning, we crammed into Chris' truck (not exactly a vehicle built for three) and Chris dropped me off at work and Hannah off at daycare before running around all over town to get new wheels for the car and change our bank account number.

Overall, my birthday was looking up later in the day. My co-workers decorated my cubicle at work, we had a large strawberry cake and ordered pizza for lunch. After work, my friend Lauren picked me up from work and Hannah up from daycare and we went to the mall to spend the gift card she had given me for Motherhood. Once we were all shopped out, we met Chris at Olive Garden for dinner. Chris had gotten the wheels and we had use of the car again.

Later last night, though, I started feeling sharp, uncomfortable tightness in the belly that was making it impossible to sleep. Chris insisted I call the midwife for advice. We've been seeing Gina Tregellis, head midwife at Countryside Birthing Place but are scheduled to meet Dr. Stephen Igel (OB/Gyn) and his head midwife, Robin, this Wednesday (tomorrow) at 3:00. I called Gina and she told me that we should go to the hospital just to be on the safe side. We woke Hannah up and headed for the hospital. I was afraid I might just be over-reacting and was depriving us all of sleep for nothing but when we got to Mease Countryside Hospital, they hooked me up to a contraction monitor and found that I was having small contractions. I almost felt relieved to hear it. At least I knew that I wasn't over-reacting to nothing.

The nurse gave me a shot of a medication called Terbutaline ("Terb") to relax the uterus. She gave me a small dose to see how I reacted and it was a good thing because my blood pressure shot up and my pulse slowed down and I got very light-headed. They decided to give me fluids via IV to hydrate me instead of giving me more Terb. I then waited for the ultrasound tech to arrive so that they could get an accurate heart rate on each of the twins. (The doppler had picked up a lot of noise from all their moving around but they could get a clear heart rate for either twin.)

The ultrasound tech was very patient with me while I kept having to roll onto my side because lying on my back made me light-headed and nauseous. Chris got to see the ultrasound this time and one baby was still being more aggressive. While one baby was curled up, the other rested his legs on top of his brother. I'm glad to report that both babies are still healthy and active with good heart rates.

Once I was hydrated with the IV and the contractions had stopped, they gave me the okay to leave but said that Dr. Igel's midwife, Robin, had ordered that I stay home and rest until the appointment on Wednesday as a precaution. At least the appointment's not far in the future. When we returned home, I fell right to sleep and had the most comfortable sleep I've had in weeks!

I hope to return to work on Thursday but my work says that I need a doctor's note stating that it's okay for me to return to work.

Keep us in your prayers... especially Wednesday.

20 Weeks

2006-06-06T17:31:00.000-07:00

Here's the tummy shot for Week 20...

19 weeks!

2006-05-21T07:34:00.000-07:00

Still growing...

Still Growing...

2006-05-15T17:38:00.000-07:00

Only a week since the last post and Mommy's belly has gotten even larger!!!

Co-workers are commenting every day that my belly's bigger than the day before. My next prenatal checkup is May 26th. Shortly after that appointment the midwife will have to transfer care to an OB doctor. Multiples pregnancies are considered high risk in America and so twin births are restricted to hospitals with obstetric doctors and water birth is out of the question. I'm very disappointed, as Chris and I were looking forward to a water birth in a birthing center with minimal intervention. We can only hope and pray now that we can find an obstetric doctor who sympathizes with our wishes to have as natural a birth as possible without endagering the babies or myself. I strongly believe that childbirth is a natural event and wish to avoid cesarean. Please keep us in your prayers as we search for an obstetric doctor.

Growing Mommy!

2006-05-06T19:40:00.000-07:00

The week before the ultrasounds, no one could tell that Mommy was even pregnant... A week later, everyone's shocked to find out that Mommy's only 17 weeks into the pregnancy... The babies are making themselves known!

Ultrasounds

2006-05-06T19:20:00.000-07:00

Baby 1

Baby 2

The Kicker

2006-05-06T18:29:00.000-07:00

That's Baby 1's foot coming down on Baby 2's head!!!

Unexpected News

2006-05-06T18:08:00.000-07:00

April 28th, 2006 Mommy went for an ultrasound and was shocked by the ultrasound tech's announcement... "Here's baby 1 and there's baby 2". Baby 1 was very active throughout the hour and a half of ultrasound pictures, kicking Baby 2 in the head and doing aerobics that left no doubt as to his sex. As you can see from this ultrasound picture, Baby 1 is not shy. The blob next to Baby 1's waving legs is Baby 2's head.